In her book Raising Charitable Children, Carol Weisman, internationally recognized philanthropy expert (and full disclosure – a friend of mine), discusses how to instill a sense of giving in children – and then watch them develop into generous, responsible, thoughtful, kind, loving and happy adults. Carol beautifully sums up her approach in one simple line:…
2021 Family Conference – What You Need to Know
Mary Fete from the National Foundation for Ectodermal Dysplasias announces a change in plans for the 2021 Family Conference.
New Breastfeeding Resources for Women with Hypohidrotic Ectodermal Dysplasia
Hypohidrotic ectodermal dysplasia can affect a woman’s breast development. This, too, can impact her ability to breastfeed her child. Download our new resources to share with your doctor, nurses and lactation specialist and educate them. This will help your team prepare for how to help you!
Showing Ava She’s A Part of a Strong Community
Ava Nawrocki is a spirited, water lover who happens to be affected by A.D.U.L.T. syndrome. Parents, Erin and Tyler, share what motivates them to help Ava by volunteering for the NFED.
Seeing Myself as Beautiful
Nicole Fitzgerald spent many years not feeling like a woman because of how ectodermal dysplasia affected her hair, teeth, skin and breasts. She found her path to feeling beautiful and wants to share that with other women.
What Does Good Dental Care Look Like?
What does good dental care look like? Dr. Beau Meyer outlines five elements to help you know what to expect as you work with your dentist or dental team.
Marching Toward a Cure!
Incontinentia pigmenti is a type of ectodermal dysplasia with challenging and complex symptoms. We need more research to understand it better, develop treatments and help parents like Shari Ezell, realize their dreams for their children.
Responding to the Insurance Shock
Melissa Pierce was used to advocating to Congress for important causes. But not for one that directly impacted her only family. She shares the unexpected emotional experience of explaining how the Ensuring Lasting Smiles Act would impact her family and thousands of others.